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POTSius

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  1. It appears that it is both an antidepressant and an antihistamine see this article https://www.medscape.com/answers/762917-36233/what-is-the-role-of-doxepin-in-the-treatment-of-urticaria-hives Have you tried more typical antihistamines? Do they work on your rash? Maybe you can take a lower dose? Maybe you will adjust to the blood pressure effects too
  2. I took 1mg for about 5 days your reaction sounds a bit concerning, have you asked your dr about stopping? Maybe you can ask your dr about taking only 0.25mg at first and see if you do better on that? (if the pill is splittable in such a way)
  3. Sometimes it takes time to adjust to a medicine That said, I also have MCAS and when I tried ketotifen I got bad fatigue so I stopped it From what I understand, with MCAS you just got to keep trying different things so don't give up! Different things work for different people I get that is hard right now due to COVID and hope you can find a dr soon who can help manage this process for you
  4. Thanks for the info, but I am a bit confused Are you saying that your POTS symptoms only started after you stopped the caffeine and ritalin? How long had you been on both of these? Is it possible you already had POTS and these two things were helping you so that you did not notice it?
  5. Thanks for the helpful answers @Sushi @RecipeForDisaster (and anyone else with experience coming off these drugs) Did you notice any sort of withdrawal issues coming off the meds when you had to stop them?
  6. I have read many accounts on this forum of positive results with stimulants like methylphenidate, in terms of helping things like fatigue and brainfog. But I haven't really seen many reports that say that it has particularly helped their orthostatic intolerance, including things like presyncope. If you are taking stimulants, do you feel it helps your orthostatic intolerance as well as fatigue/brainfrog?
  7. I get very cold hands/feet/ears I do not think I have Raynaud's though as my cold extremities are not episodic, but pretty much constant every day for most of the day. (From what I have read, Raynaud's is episodic in nature) The one thing that really helped with this for me was prazosin. This makes sense as prazosin is an alpha blocker and alpha adrenergic constriction is a fairly plausible explanation for how hyperadrenergic POTS could lead to cold extremities. but it worsened my fatigue and GI issues so I stopped it Hope this helps
  8. What treatment (medicine, lifestyle, etc) which helps you do you think is the most underrated? A treatment which, despite its good effects, you see little discussion of on these boards, etc. For me, I would say ibuprofen, baking soda (for acid reflux) and self massage for muscle pains The latter seems to work best when done maybe a dozen times on the target muscle per day, even if only for less than a minute each session Please share what has helped you so others can benefit!
  9. https://www.windy.com/-Pressure-pressure I like this one, you can get a good view of the week ahead too I too wondered whether I was affected by barometric pressure After observing for a bit, it seemed to have a negligible effect on how I feel
  10. It seems some POTS patients get this See this article https://www.heartrhythmjournal.com/article/S1547-5271(10)01204-X/fulltext a select quote from it: "POTS patients trended to lower PRA levels than did controls (0.9 ± 0.1 ng/mL/h vs 1.6 ± 0.5 ng/mL/h, P = .268) and lower aldosterone levels (4.6 ± 0.8 pg/mL vs 10.0 ± 3.0 pg/mL, P = .111)" PRA = plasma renin activity I think this is specifically for a certain subset of POTS patients? I recall recent research looking into the renin aldosterone abnormalities in POTS as being an autoimmune thing
  11. Are you sure your doctors even know what MCAS is? It is a relatively newly recognized illness, it is possible they were out of medical school before it was taught (I am not sure if it is taught even now) They may have heard MCAS and thought, shes probably thinking about mastocytosis or something else From what I know of MCAS, it can present quite differently in different people so like POTS there is not one picture of what MCAS looks like Also, due to the vague nature of the symptoms (and the sheer number of possible symptoms MCAS can cause) it is difficult to diagnose, you would really need to see an expert I would recommend doing this though as treating my MCAS has helped me enormously (but your issues could also be due to something else entirely) Hope this helps
  12. I had really bad headaches that felt like they were on the sides of my head for years I have almost completely gotten rid of them through massaging the sides of my head It may not help you, but could be worth a try First try to massage and see if you can find any sore spots. If you do, I have found that massaging those spots multiple times a day for a few days in a row helps (It takes a few days for it to work for me) see this topic for more details,
  13. I started exercising on a recumbent bike and then progressed from there I highly recommend it. If like many with POTS you have exercise intolerance of some kind, just do as much as you can to start and advance as you can handle from there I started at just 2 minutes at a very slow speed and eventually worked up to 45m cardio on it and then moved to the upright bike and finally the treadmill, roughly following CHOPs modified Dallas Protocol
  14. The 2nd half of this video discusses salt and POTS, an interesting watch It discusses the importance of salt and I think it touches on your question (can't remember, saw it a few weeks ago) Done by Dr. Satish Raj for the Dysautonomia International conference in 2018 https://vimeo.com/283559045
  15. MCAS symptoms can be similar to allergies. My point was that if you (or the original poster) were having odd symptoms caused by food beyond what normal allergies would entail I think that could be a point in favor of MCAS. To diagnose MCAS, you really need an expert's opinion as they have to take into account symptoms, symptom history, test results, and the overall "picture" of the patient. There is a lot of info online, which can be helpful although it is of varying quality
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